Tag Archives: treatment

ALL the way home…

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Just over 2 and a half years since this all started, December 17th 2015 marked the end of my treatment for ALL. Clever pun in the title? Anyone? No? I’ll stop! But I have been waiting two years to use that one.
 In December I had my last ever lumbar puncture (hooray… those of you who have been in this for the long haul will recall my not so brilliant track record with those!) as well as finally saying goodbye to bone marrow procedures for good.
It still hasn’t really sunk in. Being the ‘cancer girl’ is such an intrinsic part of my day to day life that tablets, blood tests and texts from nurses became second nature to me. I liked the security of knowing exactly what my bloods were doing each week, since this is the fastest indication if anything is wrong. Now don’t get me wrong, I’m not complaining. Waking up on December 18th and not having to worry about taking my tablets brought a new freedom that I’ve taken to very well. I’ve lost count of the times that I used to stare angrily at my tablets and think about how much I hated them and wished I didn’t have to take them (which I always would do in the end… the fear of relapse would have me swallowing those darn things faster than you can say chemo).
Although I was originally told that my treatment would end in the summer of 2015, the timing worked out well in that I was all clear of chemo for christmas. It also meant that stress alone rather than the pesky steroids was the reason I stayed awake at night before my mocks! Although I have definitely regained a lot of my ordinary life through the maintenance treatment allowing me to go to college, this final step of finishing treatment has given me another bit of much needed and greatly cherished normalcy.
With university interviews happening sporadically and my A2 exams looming *gulp* life is fairly busy. I’ve struggled a lot to find motivation with studying this year so I’m now working extra hard to ensure I don’t waste my good work from last year.
So this is it. I think I’ll write one last post on the lessons I’ve learned from this whole experience as that seems a good way to round this blog off. I’ve loved every minute of crafting posts, reading comments and most of all having a creative outlet where I’m able to be totally open about my experiences. Thank you for reading and for encouraging and  supporting me over the years. It means more than I can say.

 

Quick Life Update…

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A lot of medical things have been happening recently, beginning last week with a lumbar puncture (not good) then this week chemo (this went well!) and today ending on a bone marrow (again not good!). I don’t know why the two procedures went badly this time, I just felt a lot more pain than I normally do. Usually I can’t feel a thing and am having too much fun off in my own world (what I would do without gas and air I don’t know!) but these experiences were quite stressful as the doctors couldn’t seem to find the right spot, meaning that I had to do a lot of moving around. Shuffling around doesn’t feel right when the last thing you were aware of was having a big needle stuck in your back! Anyway, on the bright side, now there is NO MORE BONE MARROWS FOR A YEAR!

I even managed to be in college for the rest of the day, which to me was a sign of how far I’ve come. When weakened and in hospital they used to tire me out for the rest of the day and have me hobbling around in comfy clothes for at least 2 days afterwards!

My body has been amazingly tolerant of the maintenance chemotherapy, which is good as it means I am getting as much as possible. I think that should mean that the Leukaemia is less likely to relapse, which is definitely a good thing.

I am starting to pick up and successfully cope with small coughs and colds which is a good sign. Despite my immune system being lower than normal and still attacked with drugs every day it’s still pretty good!

College is still going well, I think I have a good balance between socialising and work (parents evening is coming up so I’ll get back to you on that…) and have made some great friends, so this term couldn’t have worked out better. I’ll probably never fully understand why Leukaemia happened to me, but I am starting to pick up little things in every day that I have learned or that I wouldn’t have seen or been able to do or appreciate before.

Hope everyone is well!

In case anyone hasn’t seen my hair recently, this is how it’s doing. Look at those curls coming!!!!

chemo curls

I didn’t choose the puff life, the puff life chose me…

Milestones and Melons

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Wednesday brought a 9 hour long day at St Richards. I went in for a blood transfusion but ended up staying for chemo and platelets too. Each blood bag takes a painfully slow 3 hours to go through so by the end of the day I was going crazy from boredom and restlessness! After all that my levels didn’t even improve much, despite a big bag of platelets they went up by a grand total of…. 1. Really helpful!

The good news is that I only have three doses of this treatment block left! After that I will be waiting for my counts to improve so that I can have my line taken out and start my maintenance phase which lasts just over a year. I have spent 9 months counting down to this milestone and now that it is approaching I can’t quite believe it.

Now for an update in the nail art department, here are the watermelon nails I painted myself this week (I think I went a little heavy on the black ‘seeds’ though)…

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… and as for my latest TV addiction, that would be Hart of Dixie; a show about a New Yorker called Zoe Hart trying to make it as a big-shot surgeon, who ends up living an unexpected life as a GP in a small town in Alabama. Cue red neck accents, founders day parades and endless love triangles… all very charming and American so right up my alley!

I am loving all the sunshine we are getting at the moment, but let me tell you the heat is a real nightmare for wearing a wig! If I walk anywhere with it on I soon begin to feel as if I am wearing a woolly hat, which is anything but pleasant in the hottest parts of the day! I do appreciate that it is a once in a lifetime opportunity (or I hope so anyway!) to see what I look like bald as many people will never have that experience (lucky them), but I’m getting pretty impatient for my hair to start growing back again. I’m hoping for curls.

Juxtaposition

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Hello all!
After last nights post, it turns out that my platelets have actually gone up to 71 today!!!!!
YESSSSS!!
When the nurse told me over the phone I broke out into a grin and even did a little victory dance because that is only four away from what the regime specifications require for chemo. Hopefully the bank holiday weekend will be enough time for the platelets to increase that tiny bit more (AND NOT DROP, PRETTY PLEASE!).

I will start by having a lumbar puncture and drug called Cyclophosphamide next Wednesday, then four days of a drug called Cytarabine pushed through my line at home or on Howard ward. The drugs are not new to me so I have a general idea of what to expect: tiredness and possibly a bit of sickness, fun fun fun!
In the back of my mind it feels wrong to be excited for chemo and the two words don’t even belong in the same sentence but I am really looking forward to getting this month over and done with, as you well know from all my moaning blog posts!

I’ll leave you with my current thoughts/feelings:

HALLELUJAH!

New Blood Results

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Hello!

My platelets were exactly the same today as they were last week so that means no chemo for this week. On the plus side my neutrophils are up a bit at 1.4 so I have a bit more of an immune system. They are still beneath a normal person’s results but that’s expected at this point with the drugs I’ve been on and I’ll take what I can get! My hb is 105, it’s hovering round 100 which is a good level for me.
On Monday my aunty and I drove up to the trundle hill for a picnic because there is a lovely viewpoint up there, but within minutes of arriving the rain came and the whole of West Sussex was engulfed in cloud… which kind of ruined the view a bit, as you can see!
clouds over west sussex
Life is getting pretty dull sitting around waiting for the chemo, the only exciting thing I did today was catch up with a friend. After that I didn’t really feel like doing any of the tasks I’d set myself so I watched Breaking Bad and read a book all afternoon. In the beginning it took us quite a while to get used to the fact that you can have down days where you either feel rubbish or are just lazy, in fact you need to! When I came off the first course of steroids (on which I was buzzing and doing lots) I crashed and after reading MacMillan booklets such as “How are you feeling? : The emotional effects of cancer”  (honestly not something I thought I’d ever need!) I embraced the rest days as they are good for my body while its cells are killed!
The next step is bloods again on Thursday and who knows what those results will be!

Back Home… For Good?!

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I come bearing good news!

I thought that since I don’t have any chemo for the next two weeks I’d be able to get a bit of leave to be at home rather than sitting around in hospital for ages, however the doctors have kindly gone a step further and unexpectedly arranged the REST of my treatment block through St Richards and the community nurses who come to the house!
This means I will be living at home with my bloods done twice a week and I only have to go into Southampton around 4 or 5 times in the next 2 months for the bits that St Richard’s can’t do. This is a much better deal than being stuck in the unit the whole time!

I am still neutropenic and will probably be up until June so I have to be careful about what food I eat and avoid people who are ill or have illness going round their family but I’m so glad that I get to be home that I’m not bothered! Now I just have to be super careful because I don’t want to end up in hospital when I don’t have to be because of an infection!

We had to pack up the room and there was so many bags and boxes that I have to confess I haven’t unpacked it all yet… so much stuff but so little space to store it!

So last night was possibly my last night on the unit ever! (I’m still a smidge sceptical as the doctors did say that before and then I ended up in hospital again but I will enjoy whatever time I can get at home and hope that it will all work out!)